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  • January 19, 2018 at 11:12 pm

    It helps i guess when it wears down like my body when knows next dose other than that no Im walking no better…Im functional with it..I force myself to hobble around.. try to do nordic track bike in morn when i can..This process is very rough i have been walking like this since march of last yr..

    January 19, 2018 at 5:45 pm

    Was treated for 3 or 4 months ivig treatment 5 times..It has done nothing!! I have muscle twitching throughout whole body.. I feel weakness in legs feet and slowly hands at times..I can barely stand long without a cane..My legs feel like boulders walking i hibble with a cane doing that 1960 bone test..U know that one vibrations knicks feet knees.. yet my doc says u dont have alot of weakness yet i do have numbness and Im like huh!! I take gapapentin 3 xs a day at 600 mg i been taking it fir 9 months im so used to it, it dont make me sleepy.. This doc is now stopping treatment, and referring to me a pain doctor in neurology in hospital for special surgery in nyc..This doc is also with them..Any help advice grtly appreciated..Sleeping at night for last year been a project! On top of this i have lung isuues breathing issues..Doing some research it seems my nerve damage is irrereversible!! Please help thks and prayers to ever is going through this awful disorder!

    December 27, 2017 at 4:19 pm

    Hi people Happy Holidays! So I just came from my 5th nerve treatment..The ivig.. plasmaraphesis.. Its not working,Extremely frusturating.My doc tells me to double up on the nortripticline at night.That hasnt helped taking just one dose,just lets me sleep.I am going to one of the best hospitals in nyc.Hospital for spec surgery.This does not seem to be going away and I feel deep down hes steering me wrong.I walk with a cane and the treatment hasnt worked at all.He wants to do another session then will weigh options after that whatever that means..Frusturated in nyc..I feel like im going to have this cidp for a long time..

    December 1, 2017 at 11:19 pm

    Hey guys 3 ivg treatments have done nothing..Besides side effects aftr serious headaches dizziness..Walking no better walking withba cane have had 10 months was diagnosed a lil over 2 months ago..muscle twitches fingees move on own ivg dont stop that either..On top of this lung issues 4 cat scans not normal ild.. may need lung biop.. Anyone gone through both of these at same time.. I have to go for another treamtmet next week if it dont work idk whats next..Its been a rough yr.. but im grtful others have it worse than me..thk god inhave a job and insurance

    November 3, 2017 at 10:17 am

    Hmm mrjk i didnt hijack anything..I asked one question about the predisolone.. I am having side effects from ivg!! Constant headache and still problems walkkmg..I just asked if it can make it worse thats all..I had the IVG Ivg a week ago and Im still having headaches… ok mr big mouth .. Who made u the captain of the ship btw.. smh

    October 30, 2017 at 10:27 pm

    Hi guys ok so i had ivg treatment for 4 days last week..thurs was last day.. I guess has not kicked in yet, doc says will get worse before it gets better.All day today dizzy and nautious n when i walk i feel like im gonna fall over. n dizzy.Talked to doc said it is side effect.. The pain walking sucks but now the headaches dizxiness muscle twitching esp during sleep!! Anyone gone thru this..Muscle twitches how do u deal wuth it it keeps me up at night have to put pillow between legs.. smh

    October 29, 2017 at 7:45 pm

    oh i do take gabapentin 3xs a days.. like i cant move if i dont

    October 29, 2017 at 7:44 pm

    Hi.. guys so i had treatment 3 days ago now.. it was for 4days it seeems it didnt help..Problems walking weakness..And these muscle twitching calfs legs and oh yea now arms..I feel like im radioactive when i sleep hard to get to sleep i put pillow between legs..But so many times awake violently like my bed is moving its crawling its me..My nerves firing off..I know this takes time.. it is causing arguments with my family, my dad, expects a miracle..I ice stretch but to walk i can hardly do that..Im worried i have to go back in two weeks for the ivg for once a week..I feel i should have had 5 days not 4.. signed frusturated..

    October 28, 2017 at 8:21 pm

    hi well ive heard it gets worse before iy gets beetter..I still can hardly walk honestly and having headaches which i have to take prednisolone for..Trust the process best of luck to u.. let me know how it goes..

    October 23, 2017 at 3:56 pm

    oh ok well i had been on prednisone til about a week ago but that was for my lungs..Ive had ground glass on lungs.. May need chest biopsy around corner soon..The ivg another 45 mins left its rough..But good to know the info u gave.I have some weakness in hands and arms lately.Been walking with cane 7 months.I hear u in wanting your life back the lil things we take for granted like walkinv.While the ivg in me pain through out whole body diff parts at times..Like right now my whole left leg and hand on fire!!

    October 23, 2017 at 2:45 pm

    hey guys.. uggg been in treatment for the cidp.. all morn/day ivg.. definitely not pleasent its painful.Im tired.People that had it after first day how did u feel? I can barely walk.. And I know it takes time but wow very painful..

    October 19, 2017 at 2:05 pm

    Hi guys Im nervous.. I have been diagnosed with cidp..I start ivg treatment on monday..Ive had this for 8 months in addition to breathing problens which i been seeing a pulmo for.My question is i have to go for 5 days next week..Is it painful will i be out of it.My job knows ill be out sick so at least thats good. But I know there could be side effects such as cold like symptoms..and yes breathing problems..Can anyone fill me in with info.. i have been walking with a cane and can barely stand up for few mins..This been worst experience in my life ..This all happened out of nowhere..Any advice is helpul thk u And godbless u all and speedy recovery!!!

    July 6, 2017 at 10:53 am

    Well I’m going for a spinal tap tom..kinda nervous any advice? took also diff blood tests that takes two weeks to come back..i hope this latest rd is the answers i need sick of going to doctors.. this been going on for 5 months.. i take the gabaapetin sometime my foot will go numb leg or weakness in hands.. it started in feet went up to my knee now is in arms..doc said could begin of CIDP but not sure.. i just continue to pray and follow up

    July 2, 2017 at 12:35 am

    ok so as i await to do more work for something specific they want to test.. I’ve had a tough weekend in pain tremendous knee pain and in foot stabbing burning and some weakness in hands.Im taking gabapentin 400 ms my knee today has felt like someone is stabbing it and also pain in other knee.I have not been diagnosed but its frusturating.A friend of mine said to go to hospital earlier i been to hospitals enough the last month.Today i could hardly put weight on my leg for a few hrs and now as i write this it just started again the pain.My question is this has anyone had pain like this.Im walking with a cane i was hobbling on that opposite leg earlier.i don’t know if i should go to another near I’m awaiting my 4th to get into office after 4th to do bloodwork.All the bloodworm has been normal.If normal this time they want to do a spinal tap.on top of this i have ground glass on lungs causing me breathing issues and coughing.The breathing issues are better now but now i have a monotone voice.Im scared idk if its smoking of disorder like ms cider gbs tho it cant be that cause this has been going on 3 n half month now.Any advice helpful thank u.

    June 23, 2017 at 5:41 pm

    ummm it does meet a lot of the symptoms actually and could be disorder